We knew this was coming, it was just a matter of time…
Things have been slow for the last couple of weeks, which is a good thing. But there are some developments worth sharing.
The genetic typing on the biopsy finally came in, and it was not the worst case scenario. For those of you interested in digging deeper than I care to know, I do not have a classic Ewing’s sarcoma. I do have what we’ve jokingly referred to as one of “Ewing’s inbred cousins.” It’s a tumor that presents similarly, and is treated similarly, but without the nasty perseverance. My prospects moving forward are far less hairy.
It also means that there is no hereditary genetic component. That’s good news for my son and for my brother. The vast majority of these Ewing’s-ish cancers happen to young men, in their teens and early 20s. Chalk one up to the dangers of my immaturity.
The treatment plan
The most relevant part of that biopsy is how it directs my treatment. The chemo won’t always be like the one I started with (which includes the Red Devil.) I will be alternating chemo protocols now, and the next round starts on Monday.
I say “starts” because it will be a week-long thing. Monday through Friday, eight hours a day. There is a different chemical involved, and it works by messing with the topology of the cancer cell’s DNA. For a cell to replicate, it needs to unzip the double helix — but before that, the double-helix needs to uncoil. And there are levels of uncoiling that’s needed.
Think about twisting some strands to make a simple coil. Now take that twisted strand, and start looping it to make a supercoil. Lots of twists, and lots of tension held in those shapes. So if you can keep that section of the DNA from uncoiling, you make it impossible for the thing to unzip. There is nowhere for the tension to go. (If you’ve ever tried coiling a garden hose, and realized that you need to spin the other end to make it easier as you go, then you’ve got the concept.)
The plan now is to do this round on the 4th through the 8th, then come back later in the month with the Red Devil concoction, then back to the Five Day Anticurl Therapy, then a little break before surgery. At that point, we will see how badly the tumor cells were killed off, and that will determine how many more rounds it will take to wipe out any homeless floaters I might have in my system.
Remember, I have already shown clear on the following:
- Chest CT
- Full-body MRI
- Spinal tap
- Bone marrow sample
- Bone chip sample
Far less hairy
As much as my body tried to hold on to those precious follicles, they are already well on their way to the great scalp in the sky.
A few days ago, it got to the point where running my hand through my hair would bring a couple of dozen strands along with it. Jacob went ahead and did the honors, shaving me down to a manageable length.
Alas, this only looked “this good” for a couple of days, as the little hairs started dropping. And some really long gray ones from my beard.
But that’s okay – I have an assortment of caps and hats now to keep me stylin’ and profilin’.
Odds and ends
Physically, I haven’t had the issues with the nausea, but I am still prone to fatigue. We’ve figured the blood pressure things out too – it was a separate medication and I now know when not to take it.
I am very appreciative for all of the cards and notes and texts and calls and packages and every one of you. I am blessed with an abundance of people in my support network. Many of you have offered meals, or rides to and from the infusion center. I am taking you up on those, as I can.
Next week will be long, but from what I am told it is not that taxing. I just have to bring some books and other things to make use of the time on the drip.
Much love —
Isaac.
I’m inspired by your honesty and bravery with documenting this crazy journey, Ike! The energy it must take to put into words what you’re experiencing…well, we feel grateful that you would share that energy with us.
Don’t know if I’d call it “bravery.” Part of it is just my way of processing things — part of it is being a sarcastic ass and thumbing my nose at fate — and part of it is being too lazy to answer everyone’s text messages. 😉
Ike, I’m just now hearing about your diagnosis and treatment. I’m floored! I guess because, other than my mother (breast cancer survivor), not many people around me have had cancer. Of course you’d have something rare but thankfully curable. I’ll put you and your family on my church prayer list and offer to help you in any way I can.
Thanks Scott!
Don’t be dismayed if I don’t call on you for a while. This is a marathon, not a sprint, and I’m being cautious about burning anyone out.
I wish I was closer. I’d insist on a few sarcastic minutes hang out. Thank you for sharing. I’m thinking of you and praying for you, my friend.
What makes you think you’d only get a few minutes of my sarcastic bombast?
Excellent news about the treatment and type of disease you are dealing with, and the description is wild. I had no idea there were therapies that dealt with DNA directly. You have a great sense of humor about the changes your dealing with and still looking good as well. Praying for you and your family!
I am glad you posted. I was beginning to have some “need to hear from Ike” moments. Hang in there this week. Know you have my prayers and thoughts and my friendship! Hope you have some really good books to read!
but without the nasty perseverance
Thankful for that!! And hats are cool.
Thanks for the update, I was getting a little concerned. I’m thankful for your good news and still praying for your complete recovery. I’m like Erica, I’d never thought DNA could be manipulated, great explanation. As to the sarcasm, it brightens all our days.
Sounds like a rough week ahead but glad to hear some positive signs. You look good, stay strong! –Marc
Who know, Ike. You might find that you LIKE the sleek-scalp look and not having to spend money on haircuts every three weeks, or buying hair product. I figure in eleven years of not having to buy shampoo and haircuts, I’ve saved several hundred dollars, at least. 🙂
I’m glad McMurray is not the bastard you had feared him to be, but a less dangerous cousin. Want some book recommendations? 🙂
You are beautiful and I love you. Hollie
Thinking of you & covering you in prayer & good vibes.
Just now becoming aware of your situation. Thinking of you. and I must say from personal experience that bald is always a great look and very low maintenance LOL
I feel like such a bad friend for missing this and just now catching up. I know you have a bevy of comrades around you, but this is a gentle reminder I’m just down the block when you are “in office”. I’d be glad to bring in some Chinese or some sweets and hopefully provide some stimulating conversation.
Either way, you’re in my thoughts.
The first thing that came to mind, controversial or not, was “You’re a better man than I am, Gunga Din!”. XO
Hi, Ike. I just texted you. Please let me know if you need a ride this week. Sending you a hug.
So glad to read that you’ve been getting some positive news, Ike. Thanks for sharing your experience with us and take care.
God is good! It is great to hear from you !! I’m so glad to hear that the cancer is not as bad as once believed. I’m greatful you haven’t experienced the nausea- UGH . I know this week will be rough- but hang in there!! We are praying for you daily & you rock the toboggan- looks great!! . You CAN do this!!!